Ostomy Surgery Saved Matthew Perry’s Life. It’s Time to Stop the Stigmas.

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Excerpts from Matthew Perry’s new memoir show that even TV stars are vulnerable to poor ostomy care and stigmas UOAA is working to erase.

By James Murray, UOAA President

(Update: People around the world have been reacting to the sad news that Perry was found dead in his home on October 28, 2023.)

In a preview of his new memoir Friends star Matthew Perry reveals to People that in 2019 his colon burst from opioid abuse and that he spent two weeks in a coma before waking up unaware that he had emergency ostomy surgery to save his life.

He reveals that ‘It was pretty hellish having one because they break all the time’ which as President of United Ostomy Associations of America (UOAA) shows me that even a Hollywood star is susceptible to poor quality of care and the ostomy stigmas our organization is fighting to end.

I had lifesaving ostomy surgery as a result of colon cancer and I am among the 725,000 to 1 million people in the United States we estimate are living with an ostomy or continent diversion. Many of us live healthy and active lives thanks to follow-up care by certified ostomy nurses, education, emotional support, and the fact that a properly fitted ostomy pouch should not break, smell or restrict your desired lifestyle.

The book also reveals that Perry’s ostomy was temporary and that his therapist said ‘The next time you think about taking OxyContin, just think about having a colostomy bag for the rest of your life.’ Perry says this was the catalyst for wanting to break his long pattern of addiction.

While it’s wonderful that Perry has fought to end his addiction, these words sting for those of us who deal with the consequences of ostomy stigmas in our society. We wonder if Perry would have come to see the ostomy differently if given the chance to attend an ostomy support group or talk with another person living with an ostomy during his 9-month recovery. Did he receive information about organizations that support ostomy patients prior to discharge? Research shows that these and other UOAA standards of care can make all the difference in a patient’s outcome.

Despite the fact that ostomy surgery saves or improves lives, there are still people who believe that death is a better choice than having this surgical procedure. People of all ages struggle with body image issues and acceptance in life with an ostomy and perpetrating these stigmas can leave deep scars.

Perry also mentions looking at the scars from his 14 abdominal surgeries as motivation for ending a cycle of addiction. Perry and those interviewing him are rightly celebrating and supporting addiction recovery efforts. We ask that they also give a moment to help raise positive ostomy awareness, and share our resources available to all those in need.

James Murray is President of United Ostomy Associations of America Inc. (UOAA) a national 501(c)(3) nonprofit organization that promotes quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration. Educational resources, advocacy tools, support groups and more can be found at www.ostomy.org)

Donate today to help the next ostomate in need. 

Diet and Digestion with an Ostomy

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Twelve years ago, Sarah had ileostomy surgery after living for years with ulcerative colitis. Ostomy surgery has allowed Sarah to get back to eating foods she loves, and she says “it has been the best thing for me.”

Sarah now eats many of the same things she did before her ileostomy and enjoys them more than ever. Here are some tips that Sarah has learned over the years for eating, digestion and activity.

  1. Drink up. Hydration will always be an issue, so drink lots of water. I like to toss in a slice of lemon for a little extra flavor.
  2. And chew some more. If it looks the same coming out as it did going in, you need to chew those foods better.
  3. Start slow and build up. If you’re right out of surgery, you might be more sensitive to foods than you will be six months down the road. Use trial and error to see how foods work for you and be sure to track the results. If you’ve had ileostomy surgery, add high-fiber foods back into your diet gradually to make sure you can digest them well. These include raw fruits and veggies (especially with skins), nuts, seeds and popcorn.
  4. Input always makes output. With an ileostomy, your stoma is going pretty much all the time, so it’s important to track and manage your input and output. For example, if I was going on a job interview, I would not eat a big meal right before, because my stoma may create output and my pouch would fill up – and you don’t want that during an interview!
  5. Do what you love! I go on bike rides, I go boogie boarding. It may take a little time and tracking to know what works best for your body, but you can do all those things and keep your stoma safe.

Sarah, with the help of the My Ostomy Journey App, now has the ability to track everything digitally. She can also use the app to contact someone for additional support, or if she has any questions.

Sarah says, “The My Ostomy Journey app makes it easy for us to keep track of whether we’ve had enough water or what foods we eat. I wish I’d had this resource right after surgery, especially when I was first figuring out what does and doesn’t work for my body!”

 

Editor’s note: This blog is from one of our digital sponsors, Convatec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

6 Ways You (Yes, You) Can Make a Difference on Ostomy Awareness Day

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By Ed Pfueller, UOAA Communications and Outreach Manager

The ostomy community is a big group with diverse medical backgrounds, ages, and attitudes about living with an ostomy. One thing almost everyone can agree on is that ostomy and continent diversion surgery saves lives. We all hope for a day when no one who has an ostomy feels alone in life. Ostomy Awareness Day is Saturday, October 1, 2022 ­and however you are most comfortable participating – you can have an impact. Your voice matters and now is the time to use it or support others who do. 

If You’re Supportive but Busy

I had very little to go on, more to learn than I realized, and felt somewhat lost and well, scared. Discovering United Ostomy Associations of America (UOAA) when searching online for ostomy organizations and associations was a relief and godsend. -Myrna Pair

A couple of clicks is all it takes to put a smile on the face of a resilient ostomate or dedicated ostomy nurse. Check out the heartwarming stories of those on the Run for Resilience fundraising pages. Many of them still need a donation. The Ostomy 5k is the biggest fundraiser of the year for the programs and services offered by UOAA, a national 501 (c)(3) nonprofit organization. We have not met the Virtual Ostomy 5k fundraising goal of $25,000. Donating to UOAA, whenever you have the means, helps to sustain our small but powerful national ostomy organization’s work to improve the quality of life for people living with an ostomy, all year long.

If You’re Active on Social Media

Great, stop scrolling and go share your #OstomiesAreLifesavers story today! Even if you have never talked about it publicly before, consider letting your social networks know the things you have been able to do and witness in life after surgery. Help dispel stigmas and fear surrounding ostomy surgery, you never know which of your connections may have an ostomy or be faced with surgery someday. Post a photo, video or story and tag or DM @UOAA and use the hashtag #OstomiesAreLifesavers and #OstomyDay2022

Another quick and easy way to share your ostomy story is to complete the This or That Ostomy Edition, tag uoaa and post it to your stories.

If You’d Rather Work Behind the Scenes

You don’t have to post ostomy bikini pics to be an effective advocate. Anyone can call or send our action alerts to their elected officials. The U.S. Congress has designated official days for mountain biking and cowboys but not for Ostomy Awareness. This is because of a lack of congressional co-sponsors. Congressman Donald Payne (NJ) is introducing a Congressional House Resolution designating October 1, 2022 as National Ostomy Awareness Day and needs co-sponsors and/or support for this resolution. Contact your Congressperson and ask them to become a cosponsor, by contacting Shahryar M. Baig on his staff at shahryar.baig@mail.house.gov. You can take action here on all of our advocacy campaigns.

These @delta #flightattendants and #pilot were 100% on board to support #OstomyDay2022  – Peenelopie was very excited that the pilot got to hold her! (courtesy Stomagienics)

If You Just Want to Have Some Fun While Raising Awareness

Consider printing out our Ostomy Pouch Character name it, and take pics of it wherever you go Flat Stanley style; send us your pics or post on social media. To make it even easier use our Giphy stickers found here (or search @UOAA_Ostomy)

You can still register for an in-person Run for Resilience Event near you on Saturday (Birmingham is Oct. 8) and join what is often a party atmosphere of music, sponsor tables, food and games – in addition to walking/running. 

Also be sure to wear a stoma sticker from Hollister, the Exclusive Diamond Sponsor of UOAA’s Run for Resilience. Check out all the ways you can celebrate with Hollister.

If You Want to Get More Educated or Educate Others

If you want to get some WOC Nurse level information you’re in luck on October 1st. The WOCN Society is offering an education day event open to everyone free of charge.

For a more Ostomy 101 level of learning use our advocacy tools and infographics as a handout or post online. Feel free to use any of our materials on emotional support, ostomy myths, j-pouches or more.

The day after Ostomy Awareness Day you can also learn more about ostomies and mental health during a Facebook live event hosted by Crohn’s and Colitis Foundation in partnership with UOAA. 

 If You Want to Keep the Awareness Going All Month/Year Long

Here at UOAA we work on National Advocacy all year long. Sign-up for our advocacy action alerts and Monthly E-Newsletter. There is power in numbers, become a national individual member and be counted as an official member of UOAA’s ostomy community. You’ll also get a membership and stoma pin and among other benefits.

New this year, Convatec is planning “Ostober” to focus on ostomy awareness all month long. They are the Platinum Sponsor of our Run for Resilience Ostomy 5k and we’re thrilled to see them keeping the spirit alive all month long.

 

 

Visit our Ostomy Awareness Day landing page for more information this special day. Whatever you choose to do please let us know! If you have pictures, proclamations or stories to share send them to us at info@ostomy.org and don’t forget #OstomiesAreLifesavers

 

Double Baggin’ It: A Tale of Two Best Friends Without Buttholes

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Written by Danielle Gulden and Joe Teeters

We all know that “laughter is the best medicine”!  This year’s Ostomy Awareness Day Champions, Danielle Gulden and Joe Teeters, not only love that phrase, they live it! These two best friends, and co-founders of Double Baggin’ It are IBD warriors and permanent ileostomates. They’re also comedians, speakers and Two Best Friends without Buttholes!  They truly believe in the power of laughter, humor, advocacy and awareness! Which is why they LOVE Ostomy Awareness Day!  For them, every day is a chance to raise awareness.  But Ostomy Awareness Day is a special day to reflect and celebrate their life-saving surgeries and the lives they were given back! They share their stories so that future, new and veteran ostomates know that they are not alone!

Danielle and Joe have each been living with Inflammatory Bowel Disease for over 29 years.  Although their IBD and ostomy journeys have been quite different, their positive outlook on life and ridiculous sense of humor are the same!

Prior to 2014, Joe and Danielle had no idea the other existed…so, let’s rewind a few decades and learn about the journey of each of these Two Best Friends Without Buttholes!

Growing up, Danielle was a very healthy child, an extremely outgoing teen, and an adventurous free spirit! Spontaneity was her specialty, and travel was always her first love!  Joe, on the other hand, always had “poop problems.” He was always pooping and known as “Joe the Pooper” by his siblings. Like Danielle, he was an outgoing, active, and social teenager.

Fast forward to Danielle’s late teens and early 20s. By the time she was a sophomore at The Ohio State University, Danielle’s health drastically changed! She saw her busy social life dissolve; she’d make plans and have to cancel. Spontaneity was no longer an option, and the idea of traveling was now a nightmare!

Danielle had to drop out of classes because of her poor health.  Her symptoms and pain were becoming harder to ignore. She was in the bathroom around 25 times a day and became extremely malnourished and anemic.

You can hide your bag, but don’t ever let your bag hide you!

After being misdiagnosed for 6 years with a gluten intolerance, a colonoscopy in April of 1999 showed severe ulcerative colitis.  From 1999 until 2007, Danielle’s life was a constant barrage of colonoscopies, radiological tests, bloodwork and pharmaceutical cocktails.   She did the research and finally decided to have ostomy surgery.

After high school, Joe enlisted in the Naval Reserves. He passed the military physical and was cleared for training.  While away, Joe’s poop problems became more pronounced, and the pain was gradually becoming more than just an annoyance.

When he returned home after 5 months, he was in the best physical shape of his life. On the outside he looked healthy, but inside something was wrong. Joe was initially diagnosed with irritable bowel syndrome, then a colonoscopy in 1993 lead to his diagnosis of severe Crohn’s Disease. Two years later he had his first intestinal resection. Joe’s Crohn’s continued to advance, and he had a second intestinal resection in October of 2004.

Back in Cleveland, Danielle was super excited for her ostomy surgery! She was ready to stop being a prisoner to her bathroom and get back to living her life to the fullest! On April 30th, 2007, Danielle had her total proctocolectomy with end ileostomy at the Cleveland Clinic. It was truly one of the greatest days of her life! She high fived every single person on the way to the OR.

From day one, she embraced her ostomy, and her new life as an ostomate. Within a month or two of her surgery, Danielle was back to exploring and enjoying her pre-sickness hobbies and joys. She traveled, hiked, camped, swam, went to concerts, and amusement parks. Life was good again! She also joined the Cleveland chapter of the UOAA and eventually became active on their executive board.

Fast forward a few years, and 120 miles away in Columbus, Ohio. Within a year of his second resection, Joe’s rectal Crohn’s disease became severe, and his rectum very strictured.  After consulting with his GI and surgeon, Joe had a full proctocolectomy with end ileostomy on December 27th, 2012.

Joe’s recovery process and post-surgical experience was very different from Danielle’s. In addition to becoming an ostomate, the amount of bowel he had lost from three surgeries left him with Short Bowel Syndrome. It took the better part of a year to fully recover and return to pre-surgery activities.

During Joe’s recovery, a Facebook support group for ostomates became a lifeline. It was a great source of inspiration and hope, and a wonderful place that showed him he was not alone. Later, he sought out Central Ohio United Ostomy Association support group and became a member of the organization.

By now, you must be wondering how the heck these Two Best Friends Without Buttholes finally met.  As you can see, they have traveled separate but similar paths in their battles with Crohn’s and ulcerative colitis.  Their paths crossed in that Facebook support group mentioned earlier, when Danielle posted that she and her family were relocating to Columbus, Ohio. Joe, being a Columbus resident, and fellow ostomate, reached out and introduced himself. After meeting in person, in late 2014, at their local UOAA Affiliated Support Group, they started hanging out after the meetings. They soon discovered that they had a very similar outlook on life and shared a ridiculous sense of humor, and they wanted to use that to help others. A best friendship began…and slowly but surely, their vision for Double Baggin’ It was coming together. They decided to go to the United Ostomy Associations of America’s National Conference in September of 2015. There, after meeting over 400 ostomy patients like themselves, they decided to stop dreaming and start making their vision for Double Baggin’ It a reality. Double Baggin’ It was born, that week, when they filmed their first DBI video on a rooftop in downtown St Louis, Missouri.

Through Double Baggin’ It, Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and Inflammatory Bowel Disease. They advocate and raise awareness at the local and national level for both United Ostomy Associations of America and the Crohn’s and Colitis Foundation.  Danielle and Joe also visit with their legislators yearly in Washington, DC to share their voices and stories.

You can find them on Facebook, Instagram, TikTok, Twitter and YouTube (@DoubleBagginIt) where you can watch them raise awareness through shenanigans and ostomy-bombing (placing an ostomy bag on a statue, landmark, anywhere they see fit!) They also can be found speaking at IBD and ostomy conferences, support groups, camps, hospitals and classrooms – sharing their stories and spreading laughter through improv. Danielle and Joe know that not everyone is comfortable rocking out with their bags out – and that’s totally ok! What these Two Best Friends Without Buttholes want to make perfectly clear, is that “You can hide your bag, but don’t ever let your bag hide you!”

Join with this year’s Ostomy Awareness Day Champions in spreading awareness by following Double Baggin’ It and UOAA on social media and visiting the Ostomy Awareness Day page to keep up to date on all the latest events.

 

Jessica’s Ostomy Story: Making an Invisible Illness Visible

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Words and Photos by Jessica Miles

Living with a permanent ostomy can bring on significant changes in one’s personal, social and professional life. My biggest fear around having my ostomy surgery was leakage, particularly in public, skin breakdown and altered body image. There was a lot of trial and error in the beginning, but I have found what works for me as well as the confidence to share about it. I have always been an empath and very compassionate, however, I have now found a new passion for helping others (through my surgeon and on social media) learn how to manage their ostomy as well as how to cope with their new life. If you are willing and able to adapt, you can do anything!

In 2016, after years of unexplained symptoms, countless procedures, hospitalizations, tests, and a couple of misdiagnoses, it was confirmed that I had a genetic connective tissue disorder caused by a defect in the protein collagen. I was diagnosed with Classical type Ehlers-Danlos Syndrome. More than 90% of people with Classical EDS have mutations in the COL5A1 or COL5A2 gene. I have a mutation of the COL5A2 gene. The condition is inherited in an autosomal dominant manner. Treatment and management is focused on preventing serious complications and relieving symptoms.

Classical EDS is associated with skin hyperextensibility, joint laxity, fragile blood vessels, joint hypermobility, migraines, joint and muscle pain. Some individuals with this subtype have a deformity of heart valves and may experience a dilatation of the aorta. In cEDS there is also an increased risk for aortic dissection. cEDS patients are prone to hernias and organ prolapse, as well as comorbidities such as autonomic dysfunction…which regulates heart rate, blood pressure, temperature, pupillary response and digestion.

I ended up having multiple surgeries over the past four and a half years due to intestinal dysmotility, prolapses and hernias, resulting in a port and a permanent ostomy. I now, have an ascending end colostomy. While I prepared for years for the possibility of having one, I realized nothing truly prepares you for the actuality of living with a bag on your belly for the rest of your life. Though little by little, the stigma took a back seat to the reality that life with an ostomy can be just as good, if not better for some, than life without one. I suffered constantly from abdominal pain, nausea, vomiting, bloating, constipation, bowel obstructions and malabsorption. While I still struggle with many debilitating symptoms of my disorder, I am now able to eat, gain weight and go to the bathroom regularly. Something I always took for granted until I was no longer able to do so.

My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

Though I have a constant physical reminder of my condition in the ostomy, to the rest of the world, mine is a largely invisible illness.

It’s hard to describe how I feel to someone who has no idea what daily life with a chronic illness is like. I feel awful on the inside but look perfectly fine on the outside. Putting on a brave face for all to see has become a habit. My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

I’ve learned to take everything step by step and day by day. My goal is to break down the stigma of ostomies, and while it’s not always easy, to show that one can still thrive and live a happy life with chronic illness. Due to pain and fatigue, I’ve learned to budget my energy, and while I may function normally one day, I usually need to rest the next. It’s all about finding balance. I am blessed to have an amazing support system in my husband and two boys, the rest of my family and friends.

For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way.

I am a registered nurse nationally certified in inpatient obstetrics. Unfortunately due to my illness, continuous surgeries and hospitalizations, I made the most difficult decision of my life and gave up the profession I worked so hard for and one that was a huge part of my identity. I am also an award-winning, internationally published photographer, focusing primarily on birth photography and self-portraiture. I found a new purpose, capturing laboring women and their deliveries combined both of my passions: childbirth and photography.

As a photographer, I believe that art enhances the well-being of individuals, society, and our environment and that artists have the power to heal, inspire, provoke, challenge, and offer hope. For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way. Photography allows people to see different perspectives and can be used as a tool for personal healing and positive change for many while nurturing creativity and self-expression.

My favorite quote is by the artist, Frida Kahlo. “At the end of the day, we can endure much more than we think we can.” I have definitely found this to be true and learned I am much more resilient than I ever thought I was. My illness has caused me to know myself better, which keeps my work honest and true. In the process, you truly meet yourself, which makes for better, more authentic work.

Celebrate and Support Ostomy Resilience

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By Robin Glover

The Run for Resilience Ostomy 5k is set to return for its eighth year beginning on Ostomy Awareness Day, October 1, 2022. This year’s event will feature both in-person races around the U.S. and the worldwide Virtual Ostomy 5k. Individuals and teams will be running, rolling, or walking to raise money and show their support for the critical programs and services of United Ostomy Associations of America (UOAA).

Ostomies Are Life-Savers

No matter their story, there are two things all ostomates have in common: incredible resilience and a life saved or much improved by ostomy or continent diversion surgery. The Run for Resilience 5k is a celebration of that. And while every participant can get a run t-shirt with “Ostomies are Life-Savers” emblazoned on the front, each of them have their own stories and reasons why.

For Sydney, a 23-year-old living with an ileostomy, she’s participating and fundraising for the Virtual Ostomy 5k to share the story of how ostomy surgery saved her life. She also wants to serve as an inspiration to other young people facing similar challenges and let them know they can “live the life they want because of the ostomy bag” and not in spite of it. Sydney exemplifies the resilience of the ostomy community.

Liz exemplifies that resilience, too. A month and a half after being diagnosed with bladder cancer, she underwent a radical cystectomy (bladder removal) with a total hysterectomy and stoma placement. Liz is now an advocate who wants everyone to know that her urostomy saved her life. She and a fellow UOAA Support Group leader are hosting a Virtual 5k walk in Cincinnati  because “we are living proof that ostomies are lifesavers and that you can have a fulfilling life with an ostomy.”

The need for an ostomy or other continent diversion isn’t always directly due to a medical condition. Stefphanie was hit by a drunk driver and underwent eleven surgeries in the two weeks following the crash and required both an ileostomy and a mucous fistula. Though hesitant to talk about it at first, she’s now thriving and wants to share her story to inspire others.

If you don’t want to run or walk yourself, consider shining a light on this resilience by supporting the fundraisers of people like these.

In Person Events Are Back This Year!

In addition to the Virtual Ostomy 5k which can be held anywhere by anyone, in-person Run for Resilience 5k events are back this year!

These events are family-friendly gatherings and a chance to share ostomy awareness in communities all around the country. Most events take place on beautiful parkland or waterfront trails. They also all feature an opportunity to visit with ostomy product representatives in person and visit other event sponsor tables. Race participants will also receive a goodie bag with promotional items and educational materials.

Don’t worry if you are not in running shape ­– do what you can. Walkers outnumber runners at many of these in-person fun runs. More serious runners looking for an event to attend however may want to travel to the Durham, North Carolina Run for Resilience Ostomy 5k as it takes place on a timed and certified 5k course.

Past participant Lianne Weller shared what makes these events special, “The 5k race allows other ostomates to build confidence and breakdown barriers to getting back into physical shape; going one step closer to their goal. I feel more confident and less self-conscious because I’m surrounded by individuals who have all gone through similar obstacles.”

As envisioned by the 5k founders, all locations will get an optional ostomy pouch provided by Exclusive Diamond Sponsor Hollister. Non-ostomates are encouraged to wear their ostomy pouches during the race. (Don’t worry. They’re easy to put on.)

The Arizona Run for Resilience Arizona 5k will have a great new location in Scottsdale on October 1st, 2022, with a 5k run/walk and a fun run for the kids.

The newest in-person event is the Miami, Florida Ostomy 5k taking place at the University of Miami Campus in Coral Gables on Saturday, October 1st, 2022, from 9:00 am to 3:00 pm. Organizer Ana Restrepo says the event will include food, drinks, games, giveaways, and more.

Other in-person Run for Resilience 5k events being held across the country in celebration of Ostomy Awareness Day on Saturday, October 1, 2022 are:

Vancouver, WA

Nashville, TN

Boise, ID

Birmingham, AL (October 8th)

(Please follow each individual link to get more information about times and types of races.)

 “I Intend to Be Victorious”

For every person living with an ostomy or other continent diversion, there’s a story of resilience to go along with it. A virtual participant who goes by Poo and Friends, is working to take their life back one step at a time and they “intend to be victorious.”

You can learn more about other participants of each race location or the worldwide virtual by clicking on the circle above their name and reading their story.

Don’t forget to click “Load More Fundraisers” to see them all, including Tanya who’s one of the many wonderful Certified Wound Ostomy Nurses (CWON) and Wound Ostomy Care Nurses (WOCN) taking part in the 2022 Run for Resilience Ostomy 5k.

Share Your Story Too

Are you someone who wants to help break the stigma around ostomies and be an inspiration to others? You’re encouraged to sign up, create your own fundraiser, and share your story. After all, the story of your journey can be what helps someone else make it through theirs.

To participate in the Virtual Ostomy 5k and get this year’s awesome Ostomies Are Lifesavers T-shirt in time for Ostomy Awareness Day you have to register by September 9th.

  • Run, walk, roll or pedal a 5k (3.1 miles) route of your choice. You can even use a treadmill!
  • Take pictures of yourself during your race and email them to info@ostomy.org or message or tag UOAA on Facebook, Instagram, Twitter, LinkedIn or TikTok
  • Hashtag your photos with #OstomiesAreLifesavers and #RunforResilience

Friends, family, members of the medical community, and anyone else who wants to support ostomates and celebrate their resilience are also encouraged to donate or create their own fundraiser. Fundraisers will receive special promotional items depending on how much they raise.

Help Support UOAA

Funds raised during the 2022 Run for Resilience Ostomy 5k will support United Ostomy Associations of America (UOAA), a 501(c)(3) nonprofit organization that provides national advocacy, support and resources for the 725,000 to 1 million Americans who have had or will have ostomy or continent diversion surgery. These surgeries are lifesaving and have allowed many people to return to living a healthy life.

To find out more about the Run for Resilience Ostomy 5k please visit www.ostomy.org/5k.

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

Bethany’s Story: An Architect Learns to Engineer Life with Short Bowel Syndrome

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My journey to a Short Bowel Syndrome (SBS) diagnosis followed years of motility issues, intestinal complications and numerous surgeries, including a jejunostomy, which is an ostomy that creates an opening in the part of the small intestine called the jejunum. As a trained architect, I believe there’s no problem too big to solve, and applying that mindset has helped me to navigate the challenges of SBS and life with an ostomy. This is my story.

When I was diagnosed with a motility disorder at the age of 15, I never thought that it would have such an effect in my life. I was able to function with physical activity and limited diet until I had my colon removed in 2015 due to colonic volvulus. In my case, this meant that my colon twisted around itself, causing tissue death from lack of blood flow. The procedure worsened my underlying motility disorder of the small intestine. As a result of my underlying condition of chronic intestinal pseudo obstruction (CIPO), my intestines wouldn’t function. I lost the ability to absorb nutrients through my small intestine. I was in desperate need of answers.

Ultimately, I was evaluated for an intestinal transplant. At the time, my small intestine was severely compromised due to small intestinal bacterial overgrowth. In order to improve my odds of surviving the transplant, I underwent surgery to remove the majority of my small intestine in 2018, leaving me with only four inches of small intestine that didn’t function properly. The surgery, and the resulting serious and chronic malabsorption disorder that accompanied it, resulted in my diagnosis of short bowel syndrome, SBS.

To learn more about SBS, visit https://sbs-whattoknow.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS/.

Learn More

 

While not everyone will experience an SBS diagnosis the same way, for me, the removal of my colon and most of my small intestine eliminated the ongoing pain and discomfort I experienced when I was living with a motility disorder and chronic intestinal pseudo-obstruction syndrome. Just prior to the surgery to remove my small intestine, I weighed 87 pounds and couldn’t walk half a mile without becoming exhausted. I now weigh 122 pounds and was able to walk nine miles the other day. Keep in mind that this is just my experience and everyone’s journey will be different. In consultation with my medical team, I have decided to put my intestinal transplant on hold.

In my case, living with SBS also means that if I don’t eat the right things, it can affect my electrolytes and fluid balance. Without my colon, I don’t absorb fluids. So, I have found that if I drink water, I can actually lose fluids. A key part of managing my condition has been learning to listen to my own body and trying to understand what’s happening inside. For example, I have learned to recognize the signs of dehydration and have made it a priority to understand my lab values. As I have gained a better understanding of my condition, I also think it’s been important for me to find the right providers for what I’m going through at each stage of the process.

 

Navigating how to live with a jejunostomy was a challenging aspect in my SBS management, especially when I experienced leaking. I remember once going to a rare bookstore and my ostomy bag opened. In those moments, with liquid pouring down my legs, I had never felt more embarrassed. However, my grandma taught me that you have a choice in uncomfortable situations – you can either cry or laugh. I try to choose the latter. Not everyone will experience leaks with an ostomy, but if it happens to you, I’d encourage you to give yourself grace. Adapting to life with an ostomy can be a gradual process. For example, when I first had my jejunostomy, it took me an hour to change my bag and now it only takes me 15 minutes.

Despite the challenges, I never gave up on looking for answers and solutions. My training as an architect has led me to believe there is nothing that can’t be solved. After consulting with multiple ostomy teams and connecting with people who share similar experiences, I started to embrace the changes that came with my SBS diagnosis and jejunostomy.

I have been lucky enough to receive tremendous support throughout my SBS journey. My family is my biggest source of support. My husband has been there for me despite knowing about my chronic condition. My dad is the one who figured out how to empty the additional drainage bag overnight by flipping it upside down. My mother and grandma have created customized recipes to help with my oral food intake. But, for me, it’s been a continual process to educate the people around me about my condition. I have learned to be patient and vocal about my specific needs.

For anyone living with a rare and chronic illness, I encourage you to reach out and seek community support. A few members of the SBS community have inspired me and helped me to better understand my condition and encouraged me to break down barriers in my own SBS journey by sharing their own experiences. I’m grateful for the opportunity to connect with others going through similar experiences.

When I was first diagnosed with SBS, I did not think it would be possible to continue doing the things I love. Along the way, the architect in me has looked for opportunities to “design my future” with SBS by embracing challenges, educating myself and the people around me, and connecting with others in the community. I am proud of the progress I’ve made – I have a job that I love and I live in a city that I love. SBS is only a small piece of who I am, and it does not define who I am. I hope you can embrace YOUR journey with SBS, too.

This article was created by Takeda.

 

Editor’s Note: This educational article is from one of our digital sponsors, Takeda. Sponsor support along with donations from our readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Get Answers and Find Friends at the Virtual Ostomy Symposium

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By Robin Glover

Ostomy surgery is a life-changing event. As ostomates, we go through things other people will never have to experience. Everybody’s story is different, but we have all shared in many similar aspects of our journeys. We are a unique community of strong and courageous people of all ages and backgrounds.

To celebrate that, United Ostomy Associations of America is hosting the UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13, 2022 from 10:30 a.m. to 5:30 p.m. Eastern Time (7:30 a.m. to 2:30 p.m. Pacific) including breaks.

This symposium will feature a mix of ostomates, j-pouchers, and medical professionals delivering a fun, engaging, and informative day of learning, laughing, and community-building.

Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered.

In all, 22 speakers will be bringing their expertise on a variety of ostomy-related subjects. (And don’t worry, each session will be recorded so if you can’t make it live that day or can’t see all of the ones you want, you’ll be able to watch them later.)

You can find the full list of speakers and the agenda here.

What to Expect

The virtual lobby will be open at 10:30 AM EDT before the speaker sessions begin to chat, troubleshoot any tech issues and explore the agenda. Ticket holders get an email with a unique link to the event. Attendees are encouraged to enter “lounges” organized by ostomy or continent diversion type (and one for caregivers) to chat or meet with others like you. These will be open for the entirety of the event for those who want to pop in and out during breaks.

Sponsor Booths will also be open throughout the event to give ticket holders the opportunity to talk with representatives of ostomy product manufacturers and suppliers ­– and learn about the latest product advancements. Thanks to all our symposium sponsors including Platinum Sponsor Convatec for helping to make this event possible.

The most important participant for this year’s UOAA Virtual Ostomy Symposium is you.

After opening remarks from UOAA leadership, the symposium will kick off on the Main Stage with Louie Green, a standup comic and recent ostomate. He’s going to share his poignant ostomy journey with a bit of welcoming wit.

Next on the Main Stage at 12:40 AM EDT, Joy Hooper’s Ostomy BUZZables presentation will present the newest innovations and ostomy products available on the market. If there’s something new in the ostomy world, you’ll hear about it here.

Educational Sessions 

Throughout the day, Educational Sessions will run concurrently between the Main Stage where you’ll get to hear from wonderful WOC nurses, experienced ostomates, amazing doctors and dedicated advocates.

Presentations will cover everything from sex and intimacy and traveling the world with an ostomy to nutrition and staying hydrated and dealing with hernias. Other session topics will focus on peristomal skin issues, aging in place with an ostomy, affiliated support groups, and secrets of the big four stoma types.

There will also be a special workshop for young adults. Inspiring ostomates Molly Atwater-Pulisic and Collin Jarvis will be co-hosting the conversation about physical activity, relationships, and mental health for ostomates ages 18-35.

Attendees will be able to submit questions for the speakers during the presentations and the speakers presentation materials will be available to access at you leisure.

After these educational sessions be sure not to miss Dr. Janice Beitz back on the Main Stage at 3:55 PM EDT for a presentation titled If You See a Toilet in Your Dreams, do NOT use it! Emotional Support, Quality of Life and Humor. It will look at the power of humor in dealing with emotional challenges while dispelling some myths and misconceptions about ostomies.

The event will come to a close with a special presentation from Magen Cherry, a j-poucher and winner of the 2007 Miss Texas USA competition. She uses her platform to share encouragement and bring hope to fellow ostomates and j-pouchers coming to terms with their new reality. Fun fact: Magen had a colonoscopy three days after being crowned Miss Texas USA!

Connecting with a Caring Community

Of course, there are going to be plenty of great speakers but the most important participant for this year’s UOAA Virtual Symposium is you. By taking part in this event, you’ll be able to connect with a thriving ostomy community (or j-pouchers or any other type of continent diversion) and help us grow even stronger.

As we all know, living with an ostomy or other continent diversion isn’t always easy. It can be isolating. Sometimes even close friends and family don’t want to hear anything about it. There’s fear of the future and worry about existing relationships.

Many new ostomates want to hide it forever and hope no one ever finds out. But, through organizations like UOAA, they’ll find out they’re not alone and that life with an ostomy shouldn’t be something to be ashamed of, but rather that ostomies are life-savers and that you can join others in a celebration of being alive.

This year’s event is going to be awesome. Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered. You’ll get to connect with wonderful people while gaining inspiration and knowledge that could impact the rest of your life – and the lives of others.

As you can see this is not your typical webinar or Zoom call and the $35 ticket (plus $3.88 processing fee) and sponsor support of UOAA (a 501(c)(3) charity) help to offset the costs of hosting this special event.

All of this is leading to UOAA’s in-person National Conference in Houston in August of 2023. The connections you build during this year’s virtual event can open the door to even deeper friendships when we all get to meet each other face-to-face next year in Houston!

The UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13th is going to be a great time and a great experience. And we need you there to make it even better.

To get all the information, learn more about the speakers, or find out how to get tickets, head to the event website.

LeeAnne’s Healthy Eating and Fitness Tips for People With Ostomies

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Actress, model, businesswoman, and cancer survivor LeeAnne Hayden shares diet and fitness tips that can help you live your best life with an ostomy.

Learn simple lifestyle changes you can make to improve your health and wellness.

Living a healthy lifestyle. We all know we should be doing it, but sometimes it’s not so easy – especially after having ostomy surgery. When it comes to eating and exercise, we’re worried about the possibility of blockages and hernias. I get a lot of questions about those issues.

I have had my colostomy for over six years now, and after doing a lot of testing of what my body can and can’t tolerate, I feel great. Regardless of any concerns you may be experiencing, it is so important to live a healthy lifestyle. When we feed our bodies the right foods and move our bodies with exercise, over time we will see, and more importantly FEEL, the positive results.

6 Tips for Healthy Eating With an Ostomy

So, what do we do? Our Moms always said, “Eat those vegetables and have an apple!” However, most of us must watch our fruit and vegetable intake so that we avoid intestinal blockages. Here are six tips that can help you eat well and safely:

  1. Cook your fruits and vegetables. When foods are cooked, they are easier for the body to break down. Try sautéing, baking, or even air frying your favorite fruits and vegetables. I am constantly sautéing spinach, red peppers, onions, and mushrooms, and then tossing in some lean protein and jasmine rice or sweet potatoes to complete the meal.
  2. Blend your fruits and vegetables. After every workout I have a protein smoothie. I combine one cup of unsweetened almond milk with one scoop of vanilla whey protein, a handful of spinach, a half of a banana, and one tablespoon of peanut butter.
  3. Chop your salads. The smaller the pieces, the easier they are to digest. I’ve been loving the bags of pre-chopped salad that are in grocery stores now.
  4. Take a digestive enzyme after a meal. These supplements can help your system break down vegetables and fruits even more.
  5. Chew slowly. Our lives are so busy that when we sit down to eat, we often don’t take our time. Slow down at the table and chew your food more. This will help you digest it better.
  6. Keep a food log. Writing down what you ate and how it made you feel will help you make better choices.

Be sure to check with a dietitian about what foods you can safely eat. For example, mushrooms can cause intestinal blockages for some people living with an ileostomy.

3 Tips for Exercising Your Core After Ostomy Surgery

When you have an ostomy, working on your core is important. It can be scary prospect, however, since the fear of getting a hernia is a real thing. So, always check with your doctor before starting any fitness program.

Core exercise is great for improving pelvic floor strength, posture, and balance. It also can help prevent ostomy bag leaks because the flange will fit better on your peristomal skin.

Here are three gentle core movements that you can do to help strengthen your core:

  1.  Standing single knee lift. Stand with your feet hips-length apart, and your hands on your waist or down by your side. Tense your abdominal muscles and lift one knee. Do as many as you can or three sets of 10 to 20 on one side before moving to the other side.
  2.  Holding a plank position. Planks put less strain on your spine and hip flexors than abdominal crunches or sit-ups. A beginner version can be done against a piece of furniture (e.g., a chair or a low table). Place your forearms on the furniture, keep your back flat, don’t sag into your forearms, keep your core tight, and hold that position for 15 to 30 seconds. The further away your legs are from the furniture the more activated the core will become. Advanced options are done on the floor. Put your hands directly under your shoulders, grind your toes into the floor, and tighten your gluteal and core muscles. Neutralize your neck and spine by looking at a place on the floor about a foot beyond your hands. Hold this position from 20 seconds to two minutes.
  3.  Stomach crunches. Lie on your back with your knees bent to a 90-degree angle and your feet on the floor. Make sure your back is flat. Squeeze in your abdominal muscles and bring your head to your knees. Your glutes will try to play too, but don’t let them. Focus solely on your abs, hold for three to five seconds, and then release. Do three sets of 10 to 20.

I hope these wellness tips have been helpful to you! Share with us on social media your favorite fruit and vegetable recipes, and what you think of these moves!

To learn more about LeeAnne Hayden, listen to The Beautiful Bag podcast, visit leeannhayden.com, or follow @leeannehayden on Instagram, Facebook, and YouTube.

People who provided testimonials received compensation from Hollister Incorporated. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person.

 

Editor’s note: This article is from Hollister Incorporated, a digital sponsor in support of the free online resources of ostomy.org and UOAA, a 501(c)(3) nonprofit organization.

My Life with an Ostomy- Josh

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Are you a new ostomate? Or a soon-to-be ostomate? No matter how far you are in your ostomy journey, adapting to your new situation is an inevitable part of the process. Talking to others who have already been in your shoes can help you in adjusting to this time of your life. That’s why we asked Josh Nelson, the first active-duty U.S. Airforce Pilot living with an ileostomy, to share his story and his experience with his ostomy journey to give insights on how getting an ostomy can be just the beginning of an exciting new chapter.

Before surgery

What was your life like before your ostomy surgery?

I was diagnosed with ulcerative colitis in November of 2017. Throughout the next year after my diagnosis, I tried maximum medical therapies starting with oral medications, then biologics, and then transitioned to combination therapies with biologics. Unfortunately, my body just did not respond to the medications, and the disease just took over my life. If you want to talk about quality of life with ulcerative colitis before I had the surgery – I didn’t have one. I was 145lbs. I was having 18 to 20 bowel movements a day. I wouldn’t leave my house. I knew where every bathroom, rest stop, and gas station were from my house to where I work. Any time I did leave the house, the only thing on my mind was, “Where’s the bathroom?” in case I had that sudden urgency to go. My wife and daughters left me alone. They wouldn’t even ask if I would go with them anywhere because they just knew I did not want to go anywhere. I had no quality of life. I was a prisoner in my own home, and that’s no way to live your life.

How did you feel when you learned you would be having ostomy surgery? What questions of fears did you have?

I made the decision to have an ostomy surgery in November of 2018, and I had about three days’ notice before the surgery was going to take place. The staff at the University of Minnesota Medical Center, where I was inpatient for 30 days prior to surgery, did a great job of introducing what life with a stoma will be like. My questions were, “What is a stoma?” “What are the appliances that I’m going to have?” “How do I care for this thing, and how do I recover?” and  “How do I slowly adapt to having an ileostomy and then getting my life back?” The WOC nurses were great, because they would just simply start to explain, “Oh, here’s what a wafer or barrier looks like,” “Here’s what a pouch looks like,” “Here’s what some of the accessories are.” They also explained, whether it’s ileostomy, colostomy, or urostomy, people do go on to live fully functional lives.

I definitely had some goals, but I had no fears when it came to having the surgery. I mean, okay, fine – I had maybe a couple fears of having surgery, but the stoma itself I was not afraid of. The reason for that is because I was kind of at my lowest of lows, and I thought to myself, “How could this be any worse than what I’m dealing with right now?” I remember my surgeon and the medical staff told me that once the surgery was done, I would no longer have the pain, and each day moving forward I could start to focus on getting my life back.

What advice do you have for people who are considering ostomy surgery?

My advice to anybody who is considering having the surgery is to keep an open mind. It will take some work. You will need to adapt to what you have. That means taking care of yourself physically, mentally, and emotionally because it is a step-by-step process. It is a big transition, but I’ve done everything I could to make sure my quality of life has improved. I do not regret my decision one bit. I have my life back and that’s what I think is most important.

Coming home

What was your experience like right after your ostomy surgery?

I had about five days in the hospital after surgery, and during that time I was focused on recovery, protecting my abdomen, and getting my strength back. The nurses did a great job of explaining step by step what it takes to change out the pouch and care for my stoma. Before I left the hospital, I needed to make sure that my pain was under control, starting to move around, and understood how to change my appliance by myself.

What were your goals after your surgery?

I focused on transitioning to home life again, figuring out how to slowly heal my body, and how to start eating foods again.

My goals were:

  1. Getting healthy food into my body so that my body can recover.
  2. Finding out what schedule I should be on for changing out my appliance.
  3. Observing my stoma area regularly to keep my skin healthy, prevent skin breakdown, and make sure that my stoma was healing properly.

What would you tell someone else returning home from their surgery?

  • Don’t be afraid of touching the stoma because your stoma doesn’t have any nerve endings you can feel.
  • It’s extremely important to have a solid understanding of how to change your pouch and ask for products before you leave the hospital.
  • Your WOC nurse will probably explain that what works best for you in the hospital may change after you go home and are healing up. Initially, it might be multiple times a week that you’re changing your whole appliance out because your abdominal area might’ve been swollen from the surgery, and as it starts to reside some of those wafers might fit differently.
  • Everybody’s different. Everybody responds to products differently. Those first couple of weeks to a month is just trial and error to find out which products work best for you. After you figure out your change routine, your quality of life can start to improve. You no longer need to worry about having multiple leaks or having multiple issues with your appliance, and you can start to focus on making other goals for your life with an ostomy.
  • Just take it day by day. Don’t think of the end state right away because it’s going to take time to get there. Create small goals on a day-to-day basis and then think long term and how to get there. It’s definitely a marathon; it is not a sprint. You’re going to learn something new every single day until you get comfortable living your life and understanding how to handle your ostomy.

Managing life with an ostomy

How has your life changed now that you have an ostomy?

I’ve had my ileostomy for over three years, and I can honestly say I haven’t looked back or had any regrets whatsoever to surgically remove my colon. I try to tell people my worst day as an ileostomate far exceeds my best day ever living under the umbrella of Inflammatory Bowel Disease. I am no longer bound by any type of medication. I have no special diet, nor do I have any restrictions, and my quality of life is through the roof. I could not be happier, and I do not regret the decision one bit whatsoever. But how did I get there?

First off, I accepted the fact early on that I was going to have an ileostomy for the rest of my life because it was a decision I made for a better quality of life. After accepting it, I could focus on moving forward versus dwelling on the “how’s” and “why’s” with ulcerative colitis.

Secondly, after trying multiple different products, I came across a Coloplast product that worked really well for me. Once I found the product that worked well for me, that gave me the confidence to continue moving forward with my life and not have to worry about having leakage or skin issues. I have a couple routines, I’ll change my pouch no more than twice a week, but no less than once a week. I observe how the wear and tear of my wafer and appliance is working.

On top of that, I wanted to do everything that I could to make sure that I am living the best life that I can. I made some personal decisions, such as eating better and taking care of myself. I exercise quite a bit, and I try to eat fairly well. I try to focus on eating healthy foods so I can get the nutrition that my body needs.

What are some other tips you want to share about managing life with an ostomy?

It’s important to understand that this affects everybody differently, and it’s up to you to determine what works best for you to adapt, overcome, and live your life with any type of ostomy. I reached out to local support groups, and I think that’s extremely beneficial because you get connected with like-minded individuals. No matter whether they have a colostomy, ileostomy or urostomy, you can touch base with them and share your fears and concerns. A lot of these people have lived decades with their ostomy, and they’re proof to you that you probably can too. Finding that help and resource is extremely beneficial in helping you understand how to navigate life now that you have an ostomy and what’s out there for you.

 

I hope this helped you to understand what it was like to be diagnosed with the disease, have a permanent ileostomy, and how I live my life moving forward. Thank you! -Josh

 

 

*Josh has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare professional about which product might be right for you.

At Coloplast, we strive to provide innovative solutions to support people with intimate healthcare needs and make their lives easier. Now, we’ve got an app for that!

If you’re looking for additional support during your ostomy journey, download MyOstomyLife by Coloplast® Care. The app is designed to help you be successful and build confidence in managing your ostomy by providing you with personalized tools and resources for your daily life with an ostomy.

With MyOstomyLife, you can create a digital stoma journal to track your pouching changes over time and easily download to share with your nurse, if requested. The app also provides you with educational resources offering reliable product and lifestyle advice, tips customized to your ostomy type, and inspirational videos from other ostomates like Josh.

You can also easily contact one of our Coloplast Care® Ostomy Advisors for product and lifestyle support within the app. We’re here to help!

Download MyOstomyLife for free on your smartphone or tablet today to get started!

Have any questions about the app? Visit Coloplast® Care at www.ostomy.coloplastcare.us or call

1-877-858-2656.

Information provided in the app and from Coloplast® Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis.

Editor’s note: This article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

 

Justin’s Ostomy Story: Service and Happy Resilience

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Finding Humor in life with an ostomy and IBD

My name is LTC(R) Justin F. Blum and I had my initial ostomy surgery 29 years ago and my rectum removed six years later.  These surgeries were done because of an ulcerative colitis diagnosis that lead to colon cancer.

During the 1980s, I had many colonoscopies and a litany of medications, the Army assigned me to duty stations in Kentucky, South Carolina, Birmingham AL, and Fort Monroe VA. I started with 20mg of Prednisone per day and that went up to 240mg in the fall of 1992.  During that following winter, I made an appointment with an Army gastroenterologist at Eisenhower Army Hospital, Fort Gordon GA.  After the exam, he told me I needed to have ostomy surgery. I knew what an ostomy was, I raised

Still a tanker at heart!

my voice and said, “The only way I will have ostomy surgery is if my back is to the wall and I have one foot already in the grave”. Little did I know in one year I would be having that surgery. I was bleeding profusely while taking 240mg of Prednisone per day. My last colonoscopy showed that I had a large black spot on the transverse part of my colon.

My doctor immediately scheduled me for ostomy surgery at the end of February 1993. I was in the hospital for two weeks and proceeded to convalesce at home for 30 days. Three weeks into the leave, my wife and I tried having sex for the first time as an ostomate. My bag ended up going where no bag has ever gone before and probably had a better time than we did. After some maneuvering, life did get better! I reported back to duty in Birmingham AL after convalescent leave was over. I was eventually given a J Pouch which I had for four years.

My years with IBD and now an ostomy showed me that it takes a village to obtain a good quality of life.

The next few years living with my J-pouch were horrible. Despite taking 15 hospital strength Imodium per day, I was still defecating 20 times per day. I continuously was sore on my bottom. I would develop leaks and I ended up having to wear pantyliners in my underwear. When I retired from active duty in August 1996, I immediately started my second career as an Army JROTC Instructor in Bennettsville SC. I continued to go to the bathroom quite frequently and in the spring of the following year my daughter, who was six at the time, wanted me to play horsey with her and take her around the block. I bent down half in tears and told her that “daddy can’t play horsey because he is too sore on his bottom”. I immediately went to talk to my wife and we both agreed it was time to get back to having an ostomy bag. That summer at the Columbia SC Veterans Administration hospital, I had my third surgery to restore my ostomy due to my poor quality of life with the J Pouch. On the positive side, since I’ve had an external pouch, the veteran’s administration awarded me 100% total and permanent disability. I spent the next 23 years as an Army JROTC Instructor.

By the Fall of 1997, I was ready for my first formal engagement with my ostomy. The NAACP was conducting its annual scholarship banquet and I was one of the evening’s speakers.  I made a very big mistake on the Saturday morning of the event by eating two packets of oatmeal for breakfast. I then went to a local bowling alley with my 6-year-old daughter for a birthday party. At the party, I ate too much popcorn!   That evening my wife and children attended the dinner and I was dressed in my brand-new army dress mess uniform. I was sitting on the stage at the head table when it was my time to give remarks. Once I was finished with my remarks I looked down and I thought I had spilled some water on my lap. After a closer look, I realized that that was not water but wet feces seeping through my lap. I immediately got up and my wife and I proceeded to the nearest restroom. In the men’s room, my wife was straddling me with her body trying to clean off the feces from my pouch with one hand and trying to put on a new ostomy bag with the other. During this time three individuals came into the restroom and became startled because they thought we were having sex on the floor!

From 1997 to 2002 I would experience a lot of burning, stinging, and itching around my stoma. Unfortunately, I did not have access to an ostomy nurse at any of the two hospitals where I lived in Florence SC. To my good fortune, a new assistant WOC nurse was assigned to Carolinas Hospital. I called the nurse the next day and told her about the problems I was experiencing on my skin. She immediately asked if I could come in the next day for her to examine my broken skin. That next day she examined my skin and applied Nystatin Powder to the inflamed areas. Within two days the burning, stinging, soreness, and red skin started to heal very quickly.

Despite the ostomy pouch I worked very hard my first few years and to my happiness in 2003, was named the Army Junior ROTC instructor of the year for the entire worldwide JROTC system that consists of over 5000 instructors. In August of 2010 I received a letter from Cindy Norris, Carolina’s Hospital WOC nurse who enclosed an application for the ConvaTec sponsored Great Comebacks program. The Great Comebacks program identified ostomates that also accomplished acts in their lives of giving back to others. I mailed the application back for processing. The application highlighted my time with IBD and then in 1993 acquiring my ostomy while the whole time serving my country as an officer in the United States Army. In addition, in November 2009 I was promoted to the rank of full Colonel in the South Carolina State Guard. I received a phone call from former NFL Placekicker Rolf Benirschke with the great comebacks program. He told me I would be the recipient of the Tony Snow Award for Public Service. The Tony Snow Award was annually given to an individual who has an ostomy and performed years of public service to our nation.

In 2010 and 2011 I was honored to be recognized with several awards.  I was named the 2010 volunteer of the year for South Carolina, the Tony Snow award winner, and in the summer of 2011, I was named for the second time the Army JROTC instructor of the Year. South Carolina Representative the Honorable Jim Clyburn recognized me on the floor of the House of Representatives in the summer of 2011 for these mentioned achievements while having an ostomy.

Eight years later I retired after 23 years as a JROTC instructor for a total of 44 years in uniform. My first act as a retiree was to apply to become a member of the United Ostomy Associations of America’s Board of Directors. To my good fortune, I became a board member and will have served a total of four years upon the conclusion of this tour of duty.

Justin at UOAA’s National Conference in Jacksonville , FL in August 2013. He now serves as a member of UOAA’s Board of Directors.

Over the four years, I was diagnosed and experienced neuropathy in conjunction with my ostomy. I was first put on a regimen of three 800mg tablets of Gabapentin per day which lasted six months. Not feeling any relief from the pain my doctor said we should try acupuncture. Apparently, the ears are where the acupuncture needles went because it was a central place for the pain sensors around my stoma.  I was on acupuncture for about 3 months and unfortunately, I did not see any relief. My doctor prescribed Lyrica, which is a derivative of Gabapentin. I started with one tablet per day now I am up to three tablets after two months. My pain levels have gone down considerably and fortunately I have been able to start exercising again in moderation.

My years with IBD and now an ostomy showed me that it takes a village to obtain a good quality of life. My wife Leah, who I refer to as my “Chief of Staff” is the most important person in my village. She stood by my side during four surgeries and all the years of total discomfort. In addition, if not for my caring and loving wife, I never would have gotten through the transition from non-ostomate to being an ostomate. She is my go-to person for any of my problems and she is both sympathetic and empathetic to those problems. She also stood by my side during countless tours of duty with the Army bringing her continually farther away from her home in New Jersey. Ten years prior to my initial surgery, in 1993, my father died at the age of 61 from colon cancer that spread to his liver. My ostomy surgery gave me a second chance to live because I was a prime example that ostomies save lives! If I did not have my proctocolectomy, my young wife would have become a widow with three children all under the ages of seven.

I am also most fortunate to have three WOC nurses in my life: Joy Hooper, Donna Sellers, and Joanna Burgess-Stocks. I can contact any of those three nurses at any time of the day or night, especially Joanna, if I am having problems with my ostomy/neuropathy. A healthy support system is needed for anyone inflicted with these lifetime conditions. I have learned to always look at the positive side of life throughout all those years I had IBD and now my ostomy. Today I counsel individual ostomates who are having problems adjusting to their ostomy and speak to UOAA Affiliated Support Groups around the country via Zoom and share my story and listen to theirs. Remember, you’re not alone!

Kya’s Story

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There’s no bond more important than the one with your own body. ConvaTec helps you create a healthy bond with yourself, your stoma. And then, with the world around you.

We want to show the world that people living with Ostomies have deep, beautiful nurturing relationships with everyone and everything around them.

This is Kya’s story: Coming out of the hospital postpartum and post-surgery, I honestly never thought I could never go swimming again. I never thought that I could get back to my normal life, I never thought I’d be my normal self. Turns out, I’m a better version of myself. I’m stronger and with Healthy Bonds, I am doing so much better. This is my life now. I used to think once I got an Ostomy that date nights would be stressful and less romantic, but I couldn’t have been further from the truth. Happy anniversary, baby.

 

Editor’s note: This blog/video is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

So You’re Getting an Ostomy

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By Robin Glover

Oh no! An ostomy! You’re going to be pooping or peeing into a bag attached to your stomach?? Your life is over, right? No more dating. No one will ever like you. Children will run from you! It’s so gross!

Don’t worry. We’ve all been there. As great as they can turn out to be, the idea of getting an ostomy is never really welcomed news. Add on to that, you’re probably very sick and haven’t eaten well in weeks and you’re tired and worried and feel alone. You know nothing about ostomies and are wondering what life will be like with one.

Will having an ostomy bag eventually become second nature and you won’t even really think or worry about it? Yes.

First of all, life is going to be great! You’ll feel better. You’ll eat better. You won’t be bleeding out of unspeakable places and constantly panic-stricken about finding the nearest bathroom. Your life will become more consistent and routine and you’ll end up being happy you had a lifesaving, life-improving surgery.

It’s possible that you don’t believe that right now, though. And while it does turn out to be a good thing for most, there is an adjustment period and a lot of unknowns and myths. For instance, how do I change my ostomy bag? Will I stink? What if I have an accident in public? Can I ever play sports again? Or exercise? Or go swimming?

In short– is it easy? No. Will it be fine? Yes, yes and yes. But for a little expanded information and peace of mind, we can go into a little more detail.

How Do I Change My Ostomy Bag?

You gently peel it off, wipe things off a bit, and put another one on. It really does become as simple as that. But, at first, you’ll hopefully have a specialized ostomy nurse that will teach you how to do it. After your surgery, you likely won’t have to change it yourself the first several times. But, you should practice doing it and will be better off if you make the effort to know how before you leave the hospital. It also helps to know what the standards of care should be for ostomy patients and speak out before you are discharged and sent on your way.

If you did not have access to a certified ostomy nurse in your hospital be sure to seek one out. You can also find a Wound, Ostomy and Continence (WOC) Nurse or an Ostomy Management Specialist (OMS) through product manufacturers and telehealth services.

Will My Ostomy Bag Leak?

At first, Yes. It likely will. You might even get really frustrated in the beginning because you can’t seem to put it on as well as the nurse in the hospital. Even if you put it on “perfectly” and follow all the steps your ostomy pouch can still leak. You’ll get the hang of it, though. Every ostomy and everybody is different. You’ll learn what supplies you need, where to get them, and how to use them to make sure the fit is just right.

While you might be hesitant to leave the house for a while, you’ll soon feel totally confident going anywhere you want, any time you want. And better yet? You won’t be constantly worried about being near a bathroom! There’s always the risk of a leak, though. But it won’t be a big deal. You’ll be able to detect it quickly and take care of it.

Will I Smell?

No. If the appliance is attached correctly, you should never stink. No one will be able to smell you. You can be as close as you want to other people. You can go out and be in a crowded bar and nobody will know you have an ostomy bag. There are also plenty of clothing and garment options to fit well with your pouch and conceal it from anyone ever knowing – if that’s how you choose to approach it.

If you do ever smell, that means you need to check your pouch for any leaks or openings allowing odor to escape. And if you happen to be in public, you can carry tape or any of a variety of things to sneak off into the bathroom and do a quick fix. Will it be uncomfortable or scary the first time it happens? Yes. Will having an ostomy bag eventually become second nature and you won’t even really think or worry about it? Yes.

(Quick note: The answer to a lot of questions about having an ostomy is that “you’ll figure it out” or “you’ll become comfortable” because everything will be new when you first have an ostomy bag. There’s no step-by-step guide. There will be frustrations. Maybe some tears. It’s an adjustment. Nobody just has ostomy surgery, learns to put on a pouch, and then goes about their business. You will have issues. You may have some stained clothes and probably need to change your bedsheets one or two times. But, you will figure it out.)

Can I Do Whatever I Want?

Generally speaking, yes. Of course, this depends on every unique situation, and only you and your doctor can accurately answer this question. But, in general, you’ll be able to do whatever you want. Simply having an ostomy won’t restrict you from doing anything. You might even be able to do a whole lot more than you could before.

You’ll be able to go swimming, play rugby, do mixed martial arts, teach yoga, travel the world, go on dates, and do anything you were physically capable of before having surgery. All without worrying about being in constant pain or eating the wrong thing or needing to run to the bathroom every five minutes. However, make sure to wait 6-8 weeks or until your doctor approves you for any strenuous physical activity before winning the local 5k again. (Perhaps you’ll even want to take part in UOAA’s own Ostomy 5k.)

Getting An Ostomy Is Totally Worth It

All the details about how to change your ostomy pouch where to get supplies, and when you can go back to doing the things you love will get worked out. But the important thing to remember is that having ostomy surgery is going to be totally worth it. Even if your head is spinning now about what life will be like, it will calm down.

And also remember that you’re not alone. One of the best ways to prepare is to call or visit an ostomy support and information group before you have surgery. Many others have been through the same process and are more than eager to offer a listening ear and emotional support. UOAA also offers a new ostomy patient guide and has tons of online resources to get you started on the right path.

You’ll get the hang of everything, then look back and be so grateful that you are a warrior. Countless other ostomates will tell you the same thing. That is, when they’re not busy living an incredible life they wouldn’t have otherwise.

You got this!

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

Certified Wound and Ostomy Nurse, Mary Anne Obst, on the Importance of Recognition and Treatment of Patients Diagnosed with Short Bowel Syndrome in a Level I Trauma Center

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I started my career as a surgical ICU and flight nurse providing care to the critically ill both on the ground and in the air. Flash forward 34 years, I now am the complex abdomen specialist at Regions Hospital, which is a Level I Trauma Center in St. Paul, Minnesota. As a wound and ostomy certified nurse, I specialize in complex abdominal wall injuries and enteric fistulas. I often see patients with abdominal disasters that require many levels of support including diverting ostomies and total parenteral nutrition (TPN).

A rare and serious condition called Short Bowel Syndrome (SBS) occurs in patients when part of their intestines are surgically removed or injured, and the remaining intestine may not be able to absorb enough nutrients from food and drink.

To learn more about SBS, visit https://sbs-whattoknow.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS/.

Learn More

In my experience, SBS doesn’t impact life early on in a trauma patient’s world while in the ICU. At that time, they often have little to no output of fecal matter because the body is working overtime to support the heart, lungs, brain, etc. Patients’ memories of the hospitalization usually begin once they reach our general care floor, which is when they start to mobilize, eat, and drink.

All this happening simultaneously with a patient awaking to learn that they now have an ostomy can often feel overwhelming to a patient and the family or friends who care for them. Patients and family caregivers may experience grief at the realization that they now have a temporary or irreversible ostomy. The emotional adjustment can take time. And since management of the ostomy and pouch is frequently paired with that of other injuries sustained by the patient, education is incredibly significant at this stage.

At our hospital, we have a stepwise program that involves the entire facility care team – dieticians, surgical staff, bedside nurses, patient care assistants, and other allied health professionals. We start by explaining what is happening with the patient’s body and why it requires management: SBS puts patients at risk for malnutrition, electrolyte disturbances, dehydration, and increased ostomy output. Additionally, patients and family caregivers often go through the stages of grief while mourning the loss of what they consider to be a normal lifestyle. Patient and caregiver education is incredibly significant at this stage. 

 

When it comes to SBS, I often quote nutrition support specialist, Carol Parrish, MS, RDN, “It’s not the length of the bowel, it’s the functionality.” In my opinion, following Ms. Parrish’s handbook for SBS is beneficial to the patient. You can’t prepare a patient for what comes with an SBS diagnosis, and no two situations are the same. When possible, we try to eliminate the need for long-term TPN for our patients and move toward management of SBS through strict meal planning and medication.

 

Weaning off TPN is a process that takes time, patience and commitment from patients and caregivers. It is important to educate and re-educate the care teams on medication choices and food and drink choices. I’ve seen great success from patients and caregivers that are diligent in tracking how certain food and drink affect them beyond their stay in the hospital.

 

SBS is a rare condition that is still not widely recognized in the medical community. More education for providers and access to care for patients is essential. Teamwork is key in managing the changes and challenges that come with an SBS diagnosis. There are resources available to help patients and caregivers as they navigate the journey with SBS and seek support.

 

Mary Anne Obst RN, BSN, CCRN, CWON, CWS is a complex abdomen specialist at Regions Hospital in St. Paul, Minnesota.

 

This article was created by Takeda.

 

Editor’s Note: This educational article is from one of our digital sponsors, Takeda. Sponsor support along with donations from our readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Do I Have a Parastomal Hernia?

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By Robin Glover

No need to be alarmed, but if you have an ostomy you already have a hernia! When the surgeon opened your abdominal muscles to pull your intestine through, they technically gave you a hernia. But we’re not talking about that kind of hernia. We’re talking about parastomal (peristomal) hernias. That’s when more intestine than planned pushes through your muscles and causes a bulge at your ostomy site.

You can tell if you might have a parastomal hernia by a noticeable bulge or by placing your hand over your stoma and seeing if it protrudes out when you cough. (This doesn’t count as an official diagnosis. You’ll probably also want to talk to your doctor.)

What Is a Parastomal Hernia?

A parastomal hernia is like any other hernia. They happen when an organ pushes through a weak spot in the muscle. For people with an ostomy, the organ is your intestine and the weak spot is in the same area the surgeon created your stoma.

While every effort is made to close everything and ensure a tight, snug fit, some extra intestine can force its way through and push against your skin. (This is as opposed to a prolapsed stoma when extra intestine is actually coming out of your body.)

Parastomal hernias usually happen within the first one to two years after ostomy surgery, but can occur later. While people without a parastomal hernia will tell you they’re mostly asymptomatic, those with one will likely beg to differ. Parastomal hernias can cause discomfort and pain and make it difficult to keep your appliance on.

Dealing With a Parastomal Hernia

One of the most frustrating things about having a parastomal hernia is dealing with leaks. Every parastomal hernia is unique and they come in all shapes and sizes so finding the right pouching system is important. It can take some experimenting and ordering plenty of free samples from ostomy supply companies to get it figured out.

If possible, you should also consult with a Wound Ostomy Care nurse. In fact, you should probably do this first. It can save you plenty of time and frustration. Check out this link for resources on finding one. Ostomy nurses are out there and ready to help!

Preventing a Parastomal Hernia

The best way to prevent a parastomal hernia is to listen to your doctor. When they say to not lift anything over 10 pounds for 4-6 weeks after surgery, don’t do it! You should also always be careful about what you lift and use proper form no matter how long ago your surgery was. It’s also a good idea to wear an ostomy support belt or undergarment when you’re working out or doing any strenuous activity, and to apply pressure to your stoma when you cough or sneeze.

Strengthening the area around your stoma site can help, too. But, as always, check with your doctor before beginning any sort of exercise routine. (Also, as always again, quitting smoking and/or maintaining a healthy weight can make a big difference.)

How Do You Fix a Parastomal Hernia?

Well, there’s no simple answer. Like every parastomal hernia is different, so are our bodies and the surgeries we’ve had. It will take consulting with your doctor or a WOC nurse to find a plan of action that’s specific to your needs.

But something you can do right now is find support from the ostomy community. We are a tight-knit group (and just not our sutures!) of people always eager to help and offer a listening ear.

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

The importance of a proper barrier fit for peristomal skin health

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Sponsored by Coloplast

Have you ever experienced skin issues under your barrier? While peristomal skin conditions are all too common, many are easily treated – and better yet, avoided – with the right knowledge, product fit, and support. Finding the right ostomy barrier to fit your individual needs can be a challenge and may involve trying a few different barriers to fit your unique body and stoma. Getting a nice snug fit between your stoma and ostomy barrier is key to protecting your skin, and helps you reduce the risk of experiencing a frustrating cycle of stoma leakage and resulting skin issues.

If you see an ostomy nurse – great! Every person’s situation is unique, so if you’ve worked together on a solution, or if you’re currently experiencing skin issues that may require a specific intervention, I highly recommend working with your ostomy nurse to find the routine that works for you. That said, below are some general tips that are relevant to anyone with an ostomy.

As the saying goes, “An ounce of prevention is worth a pound of cure” – meaning it’s preferable to take precautions than to suffer the consequences later. This is also true in ostomy care. So, what can taking precautions for peristomal skin health look like? While it may not be realistic to prevent skin issues 100% of the time (after all, things happen!) finding a well-fitted and comfortable pouching system for your stoma and body profile is a great place to start in reducing your chances of skin issues. I always like to explain proper fit like trying on shoes at the store. When buying a new pair of shoes there are different criteria to follow. For example, is this the right size? Is it too big? Too small? Does my foot move around too much or not enough? Does it chafe when I bend too much or too fast? All these questions can also be asked when selecting the fit of your ostomy barrier.

The right barrier?

While you might sacrifice comfort for a number of reasons when you’re picking a new pair of shoes, your ostomy barrier should be treated more like your favorite go-to shoe no matter the occasion – going out on the town, running on the trails, or enjoying a quiet night in. If your shoe doesn’t fit and move with your foot just right, you may find that you have blisters on your heels from walking in them for too long. Similarly, if your barrier doesn’t move with your body while you sit, stretch, and go about your day, you may also find blisters or painful sores underneath your adhesive. That’s why the adhesive of your product is also important to consider when finding the right barrier for you – there are a lot of options out there! For instance, there are options for more stability around your stoma, more flexibility, special sizes and shapes to better fit your body’s contours, more resistance to breakdown from stoma output, and a host of other options that your WOC nurse can help you navigate. No matter which option you choose, an ostomy barrier should move comfortably with your body and shouldn’t limit your activities or range of motion.

Does this fit just right?

A great question! Let’s continue referencing trying on shoes. If the shoe is too large, your foot slides around and can create some friction in some places like your heel or your toes. Ouch! If the shoe is too small for your foot, it’s too tight and is quite uncomfortable, which can also create some friction and maybe some sores, much like when the shoe is too big. So, how do we relate this to an ostomy barrier? Let’s discuss! An ostomy barrier needs to be snug to the stoma and measured properly. If the barrier size is cut too big, the risk of stool or urine on the skin from the fit not being appropriate can create irritation or even sores. If the barrier is too tight, the proper seal may not be achieved, and the improper fit could lead to irritation on the skin or even to the stoma if the fit is far too tight. Just like you would use a previous shoe size as a reference or a foot-measuring size guide at the store, utilizing a stoma measuring guide to size up your stoma may be key to getting the right fitting barrier. You want to make sure that the measuring guide fits snug around the stoma, but not too tight, and just close enough to the stoma so the skin doesn’t show through.

For illustration purposes only. Performance and experience may vary. Talk to your healthcare professional about what may be right for you. Please refer to product ‘Instructions for Use’ for intended use and relevant safety information.

What is a solution?

Finding the right solution may take a few tries to find the right fitting barrier for your body type and your stoma size. When finding the right fit, the goal is to reduce any peristomal skin irritation or issues you could experience from improper sizing. Utilizing a size guide or template that you created is helpful with each pouch change to stay consistent. If the fit of your barrier changes, like after surgery when your stoma swelling goes down, creating a new template may help reduce potential peristomal complications.

Making a routine for fit

Don’t forget to do a body assessment when you perform a stoma assessment. What is a body assessment? Let’s reference shoes again. Just like when you try on a pair of shoes from many years ago that used to be your favorite to wear, you may find that when you try them on, they no longer fit, and it’s time to go up a shoe size. Similarly, it’s important to observe your stoma and skin over time to make sure that the barrier you’re using still fits right. All bodies change over time, especially our skin. Fluctuations in weight and differences in skin texture may impact the fit of your barrier. One way to stay on top of your body assessments is to do an online check. Coloplast’s BodyCheck tool is a simple way to check in on your fit and assess your body and stoma profile. If you feel it has been a while since the last time you checked in with your WOC nurse for a barrier fitting, I’d certainly recommend scheduling an appointment, too. Current guidelines recommend an annual checkup with a WOC nurse, and this is a great way to get back on track with your fit.

 

Mackenzie Bauhs, CWOCN, is currently an employee and Ostomy Clinical Consultant for Coloplast. She obtained her bachelor’s degree at Carroll University in Wisconsin. She has worked with ostomy patients in the post-operative period at the University of Wisconsin Hospital and Clinics in Madison, Wisconsin as well as outpatient ostomy care at Rush University Medical Center in Chicago, Illinois.

The materials and resources presented are intended to be an educational resource and presented for general information purposes only. They are not intended to constitute medical or business advice or in any way replace the independent medical judgment of a trained and licensed physician with respect to any patient needs or circumstances. The information presented or discussed may not be representative of all patient outcomes. Each person’s situation is unique, and risks, outcomes, experience, and results may vary. Please see complete product instructions for use, including all product indications, contraindications, precautions, warnings, and adverse events.

Editor’s note: This article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.